Re: "Bending the rules" surgery scheduled

Thanks to everyone for the encouragement and support. This site, and everyone on it has been like a lifeline to us since the beginning of our nightmare that began in July 08. The information that Suzanne has been able to gather from other members of this club has been invaluable and has assisted her in so many ways, like how to deal with her doctors, what to ask, etc. The emotional support could never be replaced because only those who have dealt first hand with this thing can begin to know what it feels like. She is doing so well with her recovery and hopes to go home Monday. Again, thanks to all- please keep her in your prayers as she still has a long way to go.

Oh, and if anyone is looking for a great surgeon oncologist in Atlanta, I have just the one for you!

Re: "Bending the rules" surgery scheduled

I am so happy for Suzanne & for you and the rest of your family. I will be hoping that she will be able to go home on Monday & also hope for the best for the rest of her recovery.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice. You should always seek the advice of your physician or other qualified health care providers.

Re: "Bending the rules" surgery scheduled

Well, It's me, live and in person! I finally made it down to the computer today. I was released from the hospital on March 3. 2 weeks in the hospital was MORE than enough!

I can't thank everyone enough for the positive posts sent my way after my sister let everyone know the surgery was successful. I don't know what I would do without her, or without this website.

I'm still having some eating issues. Getting enough protein is a hard one for me. Does anyone have any suggestions? I do have to eat every couple of hours, and I need solid food but I'm having a tough time finding foods that will go down without effort. It feels like I have a small air bubble at the base of my throat. I don't know if this has something to do with the tube they had to put down my throat into my stomach while I was in the hospital. It doesn't burn like acid reflux but it is definitely something. I don't see my doc until March 27, which is when I will get the staples removed.

I'm hoping to not lose too much more weight. I can't really afford it right now.

My entire family is SO happy the surgery was a success. Now I just have to recover and get on with my life!

Re: "Bending the rules" surgery scheduled

YEA! Good to see you and you're looking great to me!!!! Keep up the great work. We love it!!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: "Bending the rules" surgery scheduled

Suzanne,

Glad to see you back on & that you are doing so well. Take care & keep us posted as to how you are doing.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice. You should always seek the advice of your physician or other qualified health care providers.

Re: "Bending the rules" surgery scheduled

Suzanne....I also am overjoyed to know that you are progressing nicely. In order to increase the protein consumption for my husband I relied heavily on shakes with added protein powder. This way it goes down easily and you can stick with the flavors you like most. There are also other ready-made shakes on the market with high protein contents.Others may have more specific suggestions. HugsMarion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: "Bending the rules" surgery scheduled

Suzanne

So glad to hear from you and to know that you're continuing to do so well! It is such wonderful news!

As Marion suggested, shakes are always a good option. You can use yogurt with a variety of fruits in the blender as well. The best protein powder that I found is "whey" protein powder. It seems to be the most palatable...I got the vanilla flavor and added it to vanilla yogurt every day. It doesn't dissolve well in liquids...kept trying it in my favorite chocolate milk, but it just didn't work! I think eating small amounts frequently is the key.

Please keep us posted and let us know how you're doing. I'm so happy for you Suzanne!

Re: "Bending the rules" surgery scheduled

If you make protein shakes in a blender, you can put in a blob (a couple tablespoons) of peanut butter. Tasty and adds lots of calories and "good" fat, also some protein. That's what helped keep me from fading away. I weighed only 109 pounds to begin with.

Re: "Bending the rules" surgery scheduled

Great news Suzanne ! Keep the ball rolling in your court. That air bubble feeling could be inflammation from the tube like you said. It could also be a blob of flem. I know sounds gross, but I had it happen twice post surgical. Felt good when it finally let loose. If it is really bothering you breathing wise go get it checked out for piece of mind. For food try boiled eggs, beans, drinks like already mentioned, healthy choice low sodium soups. Keep on the mend.God Bless,Jeff G.

Re: "Bending the rules" surgery scheduled

Hi Terri,

I am so very happy to hear about your sister and the outcome of her surgery, it is really providing me with some hope too. My sister was diagnosed with intrahepatic cholangio about 4 weeks ago, we knew about two weeks before that she had cancer in her liver but they were not sure where the primary was at that point. We went to mayo 2 weeks ago in hopes that surgery would be a real possibilty. Unfortunately in the 3 1/2 weeks from the first scan the cancer had spread about 20% more. The majority of the right is covered and there is a definate spot on the left . They wanted her to do 2 rounds of chemo and then see if it shrank at all. they wanted at least 30% left . She left feeling devistated as you can imagine. she is only 41. I know in my heart that surgery is the way to go, we just need to convince someone. She has been basically asymptomatic ( with the exception of high calcium) she is young, beautiful, strong and a great m om to two awesome kids that need her.

I was hoping you could share with me your sisters doctor in atlanta, and also if the surgery was done at emory???

Re: "Bending the rules" surgery scheduled

Hello Foodie and welcome to the best little club in the world that no one wishes to join. So sorry to hear about your sister but we all know here that hope and attitude is everything. I know you will get some good advice here and please keep us posted.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: "Bending the rules" surgery scheduled

Hi Foodie - Suzanne here. I'm sorry to hear about your sister, our situations seem to be very similar, I'm 43. My surgery was done at Emory, the surgeon is Dr. David Kooby. He's a surgical oncologist. It's been a long road to where I am now. I was diagnosed in July 2008, then went through a failed resection attempt and then about 5 months of chemo before I was referred to Dr. Kooby. I was getting ready to have radio-embolization when the interventional radiologist went before the tumor board at Emory to see if there was a doctor willing to try resection, even though I had tumors on both sides of my liver. My left lobe was entirely consumed by tumors, and I had 2 smaller tumors on my right side. This is where Dr. Kooby enters the picture. He agreed to try to resect based on my overall good health (other than cancer!), and that the tumors had remained stable (no progression) since my diagnosis. However he was very clear there was only a 50/50 chance he would be able to resect once they opened me up, also with no way to know if the cancer will come back and/or how quickly. I was left with about 25% of my liver. My recovery is going very well. I hope this helps. Please keep me posted on how your sister is doing.

foodie wrote:

Hi Terri,

I am so very happy to hear about your sister and the outcome of her surgery, it is really providing me with some hope too. My sister was diagnosed with intrahepatic cholangio about 4 weeks ago, we knew about two weeks before that she had cancer in her liver but they were not sure where the primary was at that point. We went to mayo 2 weeks ago in hopes that surgery would be a real possibilty. Unfortunately in the 3 1/2 weeks from the first scan the cancer had spread about 20% more. The majority of the right is covered and there is a definate spot on the left . They wanted her to do 2 rounds of chemo and then see if it shrank at all. they wanted at least 30% left . She left feeling devistated as you can imagine. she is only 41. I know in my heart that surgery is the way to go, we just need to convince someone. She has been basically asymptomatic ( with the exception of high calcium) she is young, beautiful, strong and a great m om to two awesome kids that need her.

I was hoping you could share with me your sisters doctor in atlanta, and also if the surgery was done at emory???

Re: "Bending the rules" surgery scheduled

Hi Suzanne,

Unfortunately the situations do sound similar, I am so happy you were able to get your surgery, knowing this has really given me a hopeful outlook. Right now, my sister is in her 2 nd week of chemo ( xeloda and gem). She said she is scheduled for a new scan on the first as her enzymes are still climbing. As it turns out, she had been given thge name of Dr. Kooby and also Dr. Staley. She was actually scheduled for an emory surgery review appointment last monday, but cancelled after a dissappointing outcome at mayo beying told that her cancer had spread over the first month of diagnosis ( she had not had any treatment , it took a while to figure out is was cholangio) so surgery was out for now unless the tumor reacted to the chemo, and knowing that she only had one day to recover prior to the start of chemo. I think her hope is to go back to emory once she has had some chemo to stabalize her situation .

Would you mind giving me a little history of what you have done ( and in what order?) Is there anything besides chemo that you had done that helped?

It has been hard not knowing anyone with this. My sister also asked if you wouldn't mind sharing your email with her. Her name is Kim and she lives in Macon. I am sorry to ask, it is such a gift you are giving to help someone else. I so appreciate it and will keep you in my prayers.

Re: "Bending the rules" surgery scheduled

Hi Suzette - I'm happy to share anything and everything I know and have had done if it is of use to someone. Here is my e-mail: suzannegm@windstream.net. I look forward to hearing from her.

Here is my timeline, all done at Emory:

-July 2008: diagnosed (from the time the tumors were seen on CT scan until biospy and diagnosis was 3 days including the weekend) - left lobe of liver completely consumed by tumors-August 2008: had a colonoscopy, upper endoscopy to make sure there was nothing going on. then the failed resection attempt - tumors found on right side. they just closed me back up.-September 2008: started chemo - gemzar & cisplatin-November 2008: follow up scans showed no change in size of tumors, no smaller but no progression either-December 2008 - conferred with Dr. Kim regarding radio/chemo embolization. He is interventional radiologist who actually ended up putting me together with Dr. Kooby-January 2009 - had liver arteriogram (aka shunt study) done in advance of radio-embolization - it's at this time that Dr. Kim tells me that he went before the Emory tumor board to find a surgeon willing to talk to me about resection. Dr. Kooby enters the picture. I owe a HUGE debt of gratitude to Dr. Kim for doing this.

I then met with Dr. Kooby, who made no promises but thought there was a chance. I then had a PET scan, which along with the liver arteriogram, and CT scan gave Dr. Kooby a good idea that nothing else was hiding inside, but again they don't know for sure until they get in. He did tell me that if they opened me up and found any cancer outside the liver that they would not resect. I knew going into this there was a chance of another failed resection but I had to try. My surgery was Feb 18, and I was in the hospital for 13 days. I saw Dr. Kooby on March 20 and he says I am recovering ahead of schedule. I had a left lobe resection, a right lobe wedge resection, gallbladder removed, and a small portion of my left diaphragm removed, all with clean margins.

Dr. Kooby is an amazing doctor, and person. He's soft spoken but very sure of his skill and what he can do. I met Dr. Staley 2 or 3 times in the hospital when he made rounds. He is very boistrous (spelled wrong). Personally, I prefer Dr. Kooby's style.

Since your sister is in Macon, and Emory (Winship Cancer Institute) is so close, I would encourage her to talk to Dr. Kooby. Also, I see Dr. John Kauh, my oncologist. I get my chemo close to home but it is dictated by Dr. Kauh.

Based on what I've seen on this website, and other people's experiences and treatments, I've found that Emory offers the same treatments and care that the Mayo clinic, MD Anderson and Johns Hopkins offers. I feel VERY comfortable that I am getting comparable treatment at Emory/Winship, without having to leave home.

I hope this helps, and if you have any questions, no matter what they are, please ask. Hang in there with your sister, this is a long road, and you will both need each other. Tell Kim to e-mail me whenever she's ready.

Re: "Bending the rules" surgery scheduled

Suzanne-

I can't thank you enough. I know this will help in more ways than one. You have had such a battle, yet you are so giving of yourself and your time. I know my sister will appreciate the information and I am so happy you have some great local resources. I have forwarded her your info , and really can't express how greateful I am that you have taken the time to share in such detail.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.